Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life

Tuesday, July 15, 2014

Reader comments

Wow, I owe some of you an apology. For the longest time the only comments the blog had been getting were utter spam. Thus, I wasn’t really checking the comments. To my great surprise today when I went in to clean out the spam, I found some lovely comments from many of you.. Thanks so much for all the well wishes! I set the comments free and I’ll start looking more carefully.

2 comments:

Hi Heather! It's me Dayra, we met last year on the HPS conference made in Puerto Rico. You know, I want to wish the best for you in the odyssey of finding the cure to the disease many people share with you. I know you'll thrive, so don't give up girl! I hope we could see ourselves again in the wonderful three day annual conference that will be made next year. :)

Hi Heather! It's me Dayra, we met last year on the HPS conference made in Puerto Rico. You know, I want to wish the best for you in the odyssey of finding the cure to the disease many people share with you. I know you'll thrive, so don't give up girl! I hope we could see ourselves again in the wonderful three day annual conference that will be made next year. :)

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About Me

I’ve kept a journal since I was about 13 years old. In it, I recorded everything around me fit for public consumption (you never know who might find a journal.) I recorded the day-to-day events of life, commentary on world events, and the rites of passage I experienced growing up. As an adult, however, life suddenly didn’t inspire entries – it got in the way of them. Once grand ambition faded into the pragmatism of trying to pay the bills. Then, in 2002, I learned I had Hermansky-Pudlak Syndrome, a rare type of albinism that causes a myriad of other health problems including a bleeding disorder, colitis and pulmonary fibrosis. At 29, I learned most people with the type of HPS I have pass away in their late 30s to early 40s. Suddenly I wanted to journal again. I wanted to leave a record of what had happened to me and what I’d learned from it. Yet writing it down has often been too painful. Here is my attempt to reconnect with my old self. I don’t want my life to be defined by HPS. I want to think about the everyday occurrences of life. At the same time, however, HPS is constantly teaching me things I want to share.